My PAE at UCLA April, 2019
Posted , 22 users are following.
I had my PAE on April 23rd , 2019. I went with Dr Justin P. McWilliams at UCLA. Today is Friday the 26th, 3 days after.
My prostate was 70CC with no median lobe issues. I am 54 years old and I live in Los Angeles. I had 3 complete retentions over the past 2 years and so it was time for me to take action.
I want to write a detailed report to this forum only because I would have never know of PAE if it were not for this forum. Today is day 3 and I will update over time.
The procedure itself was easy, but long, about 3-1/2 hours.
They put me under a twilight sedation, meaning I was awake. I may have dozed off here and there but I felt like I was present for the whole procedure.
After the procedure was done, Doc said everything went great !
I was discharged at about 4pm and my wife was there to drive me home in L. A. Rush hour traffic. It was a long 1-1/2 hr drive and I felt the need to pee the whole way. I had a pee bottle but it never got to that point. When I got home I pee’d a fiery stream that burned the head of my penis.
The first night was hell with intense pain at the end of my penis. I did not sleep a wink because I was up every 5 minutes to pee. Yesterday was better, peeing about every 20 minutes but still with intense pain and today, I am sitting here writing this with about 1-1/2 hours since last I pee’d. Pain is subsiding. I thought I would be back at work in 2 days, but not in my case!
Last night I was able to get some sleep and lasted about 3 hours before I awoke, it was a strange sensation…I always wake up about 3 hours after I go to bed with a strong urgency to pee, but last night seemed different, the urgency was not so strong. Something is changing in my body and I hope it keeps on going!
Right now, starting the stream is a little difficult, but it builds and I feel completely relieved. It is too early to see any real results. I am not on any Flomax or anything else. ( Except what Doc has prescribed for recovery, antibiotics and steroids. I refused Cipro by the way. )
I can say I am very happy with the young Dr. McWilliams and I am glad I stayed close to home for this procedure. Travel would have been difficult. ( I almost flew back east for Dr. Bagla ) I feel confident that Dr. McWilliams knows exactly what he is doing and hopefully I can update you all with good news over the next coming weeks and months.
As I said, it was in reading the posts from my BPH brothers on this forum that lead me to have this procedure done, so I want to contribute my experience for others. I have been reading these posts for many years and I have FINALLY done something about it.
Thanks to all of you!
2 likes, 71 replies
frank27027 Bobcats
Posted
HI ,Congrats to you,Great info on PAE. You said the procedure was 3-1/2 hours.Was that including time after procedure?
thanks
frank,
Bobcats frank27027
Posted
I arrived at Ronald Regan Hospital at 6AM.
Got admitted and prepped, IV set up, gown, shaved the groin area.
Into operating room I think around 8:30am.
Back into hospital room around 11:30am ( the timing is a little fuzzy, I wasn't watching the clock ). I was able to stand up and use restroom at 2PM.
I felt sick from all the meds, and so I stayed in bed until 4PM.
Feeling better, I was on the road by 5pm.
Not able to drive myself, and had not planned to, my wife was there with me and was home by about 6:30PM.
frank27027 Bobcats
Posted
Hi-Bobcats, Thanks for this info.What you say it was all worth It? I hope so.
Thanks alot
frank,
Bobcats frank27027
Posted
I am 54 years old. I have a family and a business. I travel for work and pleasure and my work keeps me in Los Angeles traffic. It will only have been worth it if my quality of life improves. I'm on day 6 and yesterday went 2-3 hours without needing to use toilet. If things continue in this direction it will have been well worth it.
gene97713 Bobcats
Posted
You will Bobcats It goes slowly and very painful with PAE. The more the pain, the more your prostate shrink and relives your bladder. it will take time for everything to relax and heal. Expect substantial changes at three weeks and further improvements up to 12 months
Bobcats gene97713
Posted
thanks for the encouraging words! im going back to work today with a new positive attitude!
frankc1964 Bobcats
Posted
hey glad to hear there is some improvement. i know what you mean about the pain... THAT was crazy! I'm not on any meds. I hope that you're 100% sooner than later. please let me know your progress, and thanks for replying!
btw, I'm into week 2 of recovery and i have not yet returned to baseline, but I'm slowly getting there. i don't have the urge every hour, i can now wait up to 4 hours, so that's promising. stream is not as weak, but still weaker than before treatment. let's hope end of week 2 brings better news.
PS no pain. which is always good. i DID set off a metal detector though. got to use my Urolift card though lol
Bobcats
Posted
Update: Day 11 and I could not be happier. On Saturday mornings I go to a community meeting from 7am-8am. I wake up at 5:30 am and have a large cup of coffee, say about 20oz. I leave my house at 6:30am and Usually I go straight to restroom when I arrive at meeting. I have never made it through the whole meeting, without having to go again before 8am. Today, I left at 6:30am after peeing at home, went all the way through the meeting without ever needing to pee and in fact waited until I got home at 8:30am to go again. There was no special breathing, or dribbling, or difficulty in starting, just unzipped at let the pee flow. It was so great.
Only 11 days in on my PAE and I can see huge results! I have not had to test holding it in for traffic or travel yet, but again only 11 days!
I will update at day 30 or so-
chuck68670 Bobcats
Posted
Thanks again Bobcats. We all really appreciate your Valuable, Experience information and thoughts. My PAE got "postponed". My CT only showed my prostrate at 38 and the IR doc said he has only done one other less than 40, and he recommended I got back to my Uro and get a Urodynamic testing. Went back to my Uro and he "declined" to order Urodynamic testing. Said he thinks it would not yield any new "useful" information. He reverted back to.... You have basically 3 choices: "Wait & Watch" "TURP" the GOLD STANDARD, or "Urolift". I don't want those 3 choices. I asked him about Rezum and he said someone in their office performs them, but he says "You will still get retrograde ejaculations, same as TURP." Please also update on your insurance cost. I too have a PPO (Blue Shield - Anthem). I had to pay $530.00 co-pay for my CT scan. My IR wanted an MRI 3T, but my insurance refused and made the IR doc agree to the CT scan instead. Best of Luck on your continued success Brother. We are All pulling for you.
gene97713 Bobcats
Posted
Congratulations, Bob!
I had the same experience but my improvements started a bit later, probably around 20 days. My prostate was 120 g at least with a huge median lobe. You will be improving up to 6-12 month, than will stabilize and might even get a bit worse, but not by much. I hope it will last at least 5 years. I can sometimes wait 5 hours before goinf to bathroo, Before PAE it was 1 hr or less.
Regarding cost of 3T MRI, somebody doubted my quote of the average cost of $2000. I don't know where it's $1300 including the radiologist's report, if a copay for much cheaper CT is almost $600. Yes, getting needed services under HMO or even PPO is getting more and more difficult. My URO refused any scanning 1 year after PAE on a reason that he recommended "GOLD STANDARD" TURP performed by him. I literally robbed him personally of his own $12,000 fee, so what else can I expect from him.
rdemyan gene97713
Posted
I stated that I am paying $1300 for the 3T MRI. I'm not sure why you feel the need to suggest I might be lying. In another thread, someone stated that they only paid $700 for their 3T MRI in Florida. Not sure why you think you know what the cost of all 3T MRIs across the country are. I was quoted $1400 in November of 2018, but when I booked the 3T MRI in April, the price had actually come down by $100.
frank27027 gene97713
Posted
Hi Bobcats, Did you have a PSA taken? Would you tell me what it was? Also did you have a FREE PSA test? Curious ,as my prostate is 117 grams and My PSA was high 17.7 ml
thanks for this info. could you PS this to me. Does a TURP really cost $12,000?
No wonder my urologist keeps puhing this on me?
Thanks,
frank,
gene97713 Bobcats
Posted
Rdmyan,
I haven't suggested anything, let alone that you are lying. I just stated that 3T MRI are still unique in this country. Most insurances won't cover it, and traveling to the cheap location might increase the cost by at least $500-600 (airfare, hotel, car).
My data was from the web research, probably slightly outdated. It's not totally clear from your report that the price includes the cost of the detailed radiology report and DVD disks. Hard to believe that somewhere in FL a facility does it for $600, when just a copay with Blue Shield is $560 (typically 20-30% of the total cost).
I don't think that paying this amount for 3T MRI vs. insurance covered CT scan with a decent resolution, is worthwhile for just finding out if you have a small slow growing cancer inside you prostate, which most likely outlive the patient. Research consistently shows that survival of PC doesn't correlate with PSA screening and biopsies of the prostate but rather depends on the aggressiveness of the cancer. Unless one suspects an aggressive cancer based on his symptoms and DRE exams, expensive tests don't prolong lives or improve quality of life. Still, very interested to hear what your 3T MRI reading tells about your prostate. I'm a human being and my opinion might be wrong. In medical field one size never fits all.
rdemyan gene97713
Posted
gene:
Just a few days to a week ago I started a thread on what to expect from a 3T prostate MRI. Got a lot of good suggestions from posters (check it out if you are interested). IIRC that is where someone said they only paid $700 in Florida.
I have multiple email chains with UCSF staff and even the head of the prostate 3T MRI department regarding what they include in a standard report. I'm asking for additional comments that they can provide if asked, but don't if not asked. I've already filled out the form and will be getting a personal copy of the results as well as the images on DVD. I just paid for the 3T prostate MRI with and without contrast today and the total charge for everything is $1,303.47 (this is self pay; I do not have insurance to cover this test). I paid $1250 for a hot tooth, root canal last year, so I'm more than happy to pay this amount for a 3T prostate MRI.
The MRI will provide additional data beyond cancer information. I will get the best estimate of the prostate volume, comments on the seminal vescicles, size of the median lobe and also comments on the state of my bladder. Knowing whether or not I have a median lobe issue might assist me in deciding on the best procedure in the future. I like having as much information as I can, because ultimately treatments are my decision.
Although I asked for some comments on prostatitis the head of the dept said that this is difficult. I believe that I have suffered from prostatitis and still do to some degree, but it is notoriously difficult to diagnose. I've seen some posters state that prostatitis has been diagnosed by 3T MRI, but UCSF is stating that is not so likely.
Cheers.
Bobcats
Edited
Day 39 post PAE update: ( I started this post, sometimes user names are hard to follow )
First off I will just say that I am very happy with my results of my PAE. I am completely recovered, going to the gym, having sex, no pain or discomfort whatsoever. The only thing still remaining is a little blood in semen. I never had blood in my urine, and blood in semen is brownish, but is slowly going back to normal. And as expected NO retrograde ejaculation. Doc says no worries on semen.
What has changed?
1.Frequency: If I drink a lot, I still pee a lot. In the morning, coffee and water keep me peeing every 30min to 1hr ( but the intervals are slowly getting longer and longer between.) By lunchtime and through the afternoon and evening I am lasting 2-3 hrs. This is a GREAT improvement for me where previously I would pee every 15 minutes in the morning and 45mins to 1 hour the rest of the day. Nighttime getting up is 1-2 times.
2.Flow: I don’t feel like my flow is super strong as far as “ rate of flow " but it is much stronger than before, however the huge change is in starting and completing. I used to dribble to start and then stop and start and stop and start. Now it is one continuous strong flow from start to finish with a good feeling of being completely empty. Ahhh… what a feeling that the younger me took for granted!
3.Urgency: (And I have saved the best for last.) Before PAE I would feel the need to go and within 5 or 10 minutes, it would become extremely urgent! If I had to hold it in for 15 minutes or 30 minutes or longer, like being stuck in traffic or on a flight, then by the time I got to the toilet, I wouldn’t be able to start. I would stand in front of the toilet, try to relax, breath, and finally I would dribble out a little, all the while starting and stopping. This would almost always trigger and set off a chain reaction for the rest of the day for frequent urgency and incomplete voids. ( And 3 complete retentions over the past 2 years which required catheterization.) It usually took me a day or 2 to get back to my previous normal, which was frequent, but complete with starting/stopping.
Now at day 39 post PAE, if I have to go , there is NO urgency. I can hold it in for 30 minutes or an hour and when I stand in front of the toilet, it flows right out with one continuous strong stream. No breathing, no ritual, just PEE. This is the miracle! Maybe I was a very good candidate for the procedure , but for me it has really improved my quality of life in a very short time. There has not been one instance in the past 39 days where I felt - I NEED PEE RIGHT NOW!
Last week I traveled on business from L.A. to Philadelphia for a week long trade show. In the past, travel was a huge obstacle that required strategic planning that included when I would drink , when I would pee, and NEVER passing up a near by toilet at the airport or along the way. Always making sure to PEE before the dreaded “ fasten your seat belt for landing ”. If I missed that opportunity and got stuck in my seat, there would be Hell to pay.
This flight was an absolute pleasure! I would go 2-3 hours without even feeling the need to go, but mentally I would say to myself “ well I’d better go just to be safe ”. Old habits are hard to break. On the last leg of the flight I pee’d an hour before landing, collected my luggage, drove an hour home, and never thought about peeing until AFTER dinner with my wife at home! Yes a miracle!
I know this is a VERY long post , but I hope it helps someone out there.